Community Discussion Forum New to mild hyper pku and behavoir

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  • #9151
    Avatar of margot

    Hi I am new here.  My seven year old son was diagnosed with mild hyper phenylketronia at birth and since his levels were around 300, I was told that he needs no special diet and he is in the safe range.  His levels are still this high and he has a lot of behavoir problems.  He has been diagnosed with Asperger's.  He has a lot of rage issues and depression.  I feel like this all could very well be related to his high phenylalanine levels and may just look like Asperger's.  I am setting up an appointment at Mt. Sinai pku clinic, but in the meantime, has anyone else had experience with this?  Thanks for any input

    Avatar of Nicole

    I hav'nt experienced this but i think you could be right about it being related to high levels of PHE x

    I hope you get more information x

    Good luck x

    Avatar of Keith

    I get very emotional as well not sure what it is from but i do know that i have been depressed for some time and i do have some rage issues. I just recently started up my formula for my PKU and have notice i have calmed down a bit and i am not as depressed which has helped me with my work.

    I am just hoping i can stay on it so that i can be better off then i have been ove rthe past few years.

    Avatar of

    hey there,

    im definitely no expert in the field, but am doing postgrad research into similarities between PKU and ADHD, and i would suggest that maybe the high Phe levels may be contributing… while 300 is considered safe for those with PKU, its not optimal. and its definitely not uncommon for people to have behavioural/cognitive symptoms at these levels. 

    its always the case that the individual will provide more information than numbers ever will. numbers are always somewhat arbitrary, whereas behaviour speaks for itself. 

    also to keep in mind is that asperger's is a diagnosis to be always taken with a grain of salt. so i believe youre definitely onto something by questioning the relevance of high Phe levels. 

    all the best, 


    Avatar of margot

    Thank you to all who have replied.  I didn't realize anyone had responded, because I thought I would have been notified by email.  Went to Mt. Sinai this week, but levels not high enough (3.4) for aetna to pay for kuvan.  however, I think we may be able to get a trial dosage from bio marin (thanks!)  I will let you know how it works out regarding depression/rage behavior. 

Viewing 5 posts - 1 through 5 (of 5 total)
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